Hi Micahsmom

October 21, 2010 at 5:59 pm

I am fairly new to the disease even though I probably had it a long time (15+ years of weird symptoms) but it was not diagnosed until I had a nerve biopsy in June 2010. Other blood tests were abnormal but the local doctors (even a local neurologist) could not figure it out. They thought I had lead poisoning, lyme disease, MS, RA, lupus, etc. So I was referred to a neurologist in Dallas with a lot experience in neuropathies. BINGO!!! I am currently on IVIG (gamunex) every 4 weeks. It seems to be working, so far. I have gotten some feeling back in my feet and legs. Most of my toes are permanently damaged so I can no longer move them because I had gone so long without treatment. I was 59 when I was first diagnosed and it most likely started when I was in my 40s. Luckily for me the disease progressed very slowly until a few years ago.

Having raised 2 sons and now have 7 grandchildren I can only imagine how difficult it is to take care of a baby while having this disease. As a grandmother I wish I had the strength to babysit more, but it totally wipes me out and I cannot do the things that healthy grandmothers can do. This forum is an excellent outlet for all of us. It helps to “talk” with people who truly understand….

Hang in there and give that beautiful baby a kiss for me.